Living Obliquely

Approximately 1400 people are diagnosed with Transverse Myelitis (TM) annually.Similar to Multiple Sclerosis, it attacks your myelin, leading to painful and debilitating side effects.About 33,000 Americans are currently disabled as a result of this rare neurological disorder.Not one person with TM will ever know their prognosis.I happen to be one of them.

I am a neurological soup. Since my TM diagnosis, I have developed encephalitis, MS, RSD/CRPS, Osteoporosis (I am 34, no 35, eek), and Chronic Anemia. Yeah...life sucks, but I still rock.

2.10.2012

The unfinished thought. The unpublished posts. Speaking and Listening. Is it really 50/50 in brains with neurological disorders?

I haven't completed a post in months. I've accumulated 60+ unfinished posts way past due for publication... but some day.... I have more To Do lists and To Do's done. And more tiny notebooks full of thoughts and ideas and poems and projects and things I will accomplish that will change the world or change my world, or just get me up to speed with the world, or your grandmother. But to be honest, I don't even know which world (or grandma) I'm racing against - or maybe it's that I forgot which world it was, or maybe there are just too damn many worlds to fit into this mind and body... and vice versa.

FLASHBACK

Since I could write, I wrote lists. I made lists for every thing, occasion, time of day. And I completed those lists. In my early 20s I wrote a 1-, 5-, and 10-year plan of my dream life. And as my dreams changed or progressed I revised the plan, and I accomplished what I set out to do; what I had known I would do since I was a child.

At 36, I'm lucky if I complete the setting and doing of my daily speech therapy project (it's a really good one if you don't beat yourself up for screwing up); three daily goals - simple tasks, like give self copaxone injection; prepare for doctor's appt., etc. - more basic than the lists I made at age six. And I am lucky - reminder to self: I CAN WALK (most of the time - and with durable medical equipment, but I can walk!)

Today, after my twice weekly speech therapy session, I was a bit inspired, and I logged onto one of my favorite Web sites, dictionary.com. After looking up a few words (I thought were knew, but I had merely forgotten), I scrolled down to the quote of the day. Enamored by it, I clicked the little elephant head at the top of my computer screen and saved a screenshot of it to Evernote to add to my list of favorite quotations.

Tagging is a strange thing. I never know when to stop. As my speech therapist said, "I get elaborate." One day, I limited myself to three tags per note, or bookmark. What an internal struggle. As though I was contemplating life and death; but no, alas, to tag or not to tag. Which tags are the answer?

Today amidst my elaborate tagging, combined with the profundity of the Quote of the Day, the word ampersand, it's definition & etymology and probably a few other internalized ingredients, like ritalin and morphine, (that was well controlled 2-tagger!) taken as prescribed a poem spawned - in Arial 10pt between the screenshot above and my literary diligence below- how to cite the quote in the screenshot in every possible and acceptable manner copied and pasted and ready for use.

In order to complete this post and hit that sweet orange Publish button, I'll let my Evernote note speak for itself. Just remember, I'm a rusty poet, and it's just a first draft. It ain't no Montaigne, but it's a start... and for today's goal, a finish.

UNFINISHED or TO BE CONTINUED or CLIFFHANGER ON THE EDGE OF THE EARTH...AGAIN... BUT...AND...

The neuro brain, at least in my case, does not understand time. I don't experience it, I don't feel it passing, I don't know until my skin tingles and burns and my joints talk - take your meds, I need my meds. I don't know when it's Wednesday or Tuesday, or if that funny thing happened this week or last year. My time is as flat as the bible's Earth. Is there a Flat Timer's Society*[see [*] reference @ bottom. it's giggle worthy], just like the Flat Earther's? If so, sign me up. OR no, take me off the list and mark as spam. I'm working on relearning time. Maybe this is something I should get into when I have more of it.

And speaking of which, I'm going to publish this as isright now - WITHOUT every link, photo, graph, likeness, or the actual post I planned to post... because my time management still sucks, and I have two adorable nieces waiting for me. They are much more important than spell check, some creative commons pics to spice up the page, or "finishing" this, or any, blog post or daily goal. AT least I can say: I set out, I did, and Iadjusted.

However, I will take advantage of Zemanta's generosity, and swiftly add the related reading links to give you the richest experience possible, while making me look really smart and thoughtful. Click, click, click, done. IF you're a blogger and you haven't downloaded Zemanta - do it. It rocks.

ADJUSTING - A WORD WITH MANY MEANINGS Adjusting is one of the key bullet points of the neuro-gimp-sicko life. Yeah, we all make adjustments. I certainly made a lot pre-neuro, pre-gimp, pre-sicko (by definition). I can think of my marriage and divorce. My home life and my 17-year old escape, concrete as disownment and it's etymology - really, no joke, click the link.

I'm taking ownership of this text in progress, and I'm hoping this is interesting enough for you to look forward to PART II, where I reveal my source, myself in verse (non-rhyming, non-meter, thankyou), and in anal-ity. (I made up that word, use as you desire.)

And, to play with words, as you know I prefer even more than Tonka Trucks™ and Barbie Dolls™: existing or being with a sense or knowledge of time, would in many logical debates result with the winning conclusion that being so means, in short, that one is timeless. Isn't that a nice thought to end with - at least for me.

Timelessly yours,
Melanie
aka To Be Continued Woman

* FUNNY: When I searched for Flat Timer's Society this was one of the PAGE 1 hits:

Lying in a Hammock for Tuesday's Tryout (margoroby.wordpress.com) [From
Melanie: I used to go to the James Wright Poetry Festival in a little
town in Ohio with borough names like Toilet or Fllushing, or something
bathroom like. James Wright is a master. Read him. Escape.]

If you're a Philly-region person with TM, please consider joining the Transverse Myelitis Philadelphia network (http://www.facebook.com/inbox/?ref=mb#/group.php?gid=44446668472), a new social networking group that I started for people with TM so that we can meet and chat casually. It's only on Facebook for now, so, if you haven't already, join. It's easy.

In Pictures

Please Note: Some photos may contain partial nudity or depictions of medical procedures. Though I am in many of these photos, my reason for sharing these personal photos is to promote awareness, understanding, and advocacy for people with TM and other rare diseases.

To play the slide show, click the big play button in the center of the screen, then the small one in the bottom left corner. Click here for more advanced viewing instructions, and select "Help."

Want to know more?

The following are (incomplete) lists of resources, news, and groups that relate mostly to Transverse Myelitis, but also other neurological, autoimmune, and rare diseases, as well as spinal chord injuries, and people with disabilities.